Thursday, November 27, 2008

Day 180 - Nov 27, 2008

I hope everyone had a great Thanksgiving today. We had a nice dinner and both the food and the company was great. I still miss not being with my family, but that's just the way it is. I suppose I am going to have to get used to it because we will not be living near them for a while.

To be honest, I do want to say something about the doctor's suggestion that we stay where it is warm - at least for a couple of years. I have gotten a few personal emails from people upset or just not understanding why we are going to be staying here. First, I do understand that there are people out there that have burns and live in colder states. That's just great for them and I am glad they were able to do that. Kevin isn't. He really isn't. This isn't me snubbing any person or any state or any town.

I think it's a pretty safe thing to say that each patient is different. The doctors and I are basing all of our decisions on Kevin's patterns and needs. We see Kevin violently shivering when his room is under 75 degrees. We see him moaning in pain when the water is only lukewarm in the shower. We see him not touching or eating anything cold anymore. There are a whole slew of things that we are seeing that frankly - the other patients may not have done.

And we can't actually say why Kevin can't tolerate the cold. He can't tell us. And yes - it probably is mostly from the burns. Maybe even all from the burns. But it could be part of the brain damage as well. We also have the issue of a weakened right side. Even with his room being so hot, his right leg and arm are usually ice cold. It doesn't matter that he has garments on, socks on and a blanket - he is cold.

So I think I am going to ask that everyone trust me to do the right thing for my son. Please know that I don't actually want to live in Florida and I can assure you that this is not easy. I would love to be able to go home and have some help. Breezy will be going back to PA to live shortly and it would be really nice if I could call a family member or friend and say "hey - can you come over and spot me for an hour while I get a haircut?".

Lastly - even if Kevin wasn't burned - we still will not be able to go home to PA for a very long time. Kevin needs to be within 30 minutes or so from a Polytrauma VA unit - at least for a while. There are 4 in the country that handle his place in recovery right now. The closest one to PA is Richmond, VA, but it actually costs more to fly there than to Tampa (strange, but true).

So there it is. I am laying it all out on the table. Once again, I ask that you all trust me. It is my goal to have Kevin in a home environment within the next 4 months and we will not be able to go back to PA at that point so we are staying here in Tampa near the best brain injury hospital in the country where the palm trees sway in the warm sun.

So who wants to come spot me for a bit while I go get a haircut? It was a beautiful, warm and sunny day here today...lol...

6 comments:

Anonymous said...

So glad you were able to have a nice day. Do you remember that old saying, home is where the heart is"?. I know your heart is with Kevin and that's where it belongs so your home, for now, is right where you are. I can't believe you have to deal with anyone questioning your judgement or being upset you are staying put. Any good Mom would do exactly what you are doing and you are way beyond a good Mom!! Every decision you have made so far has been right on the money and I have no doubt you will continue to make the right choices for yourself and your family. You keep fighting and stay strong and of course we will continue to pray for all three of you. Melissa Ion

Anonymous said...

Leslie,

You and your family are the ones to make that decision. I think the ones who suggest things to you, in a kind and positive way, are doing just that...attempting to help and guide you, especially when you question.

It is none of anyone's business to EVER judge you. No one has been with your child day in and day out, as you have been. Certainly every GOOD Mama is going to think of her child first.

Hang in there and always remember, we are there for you..and we most certainly do care.

Happy "Belated" Thanksgiving to you and your family too. : )

Anonymous said...

Happy Thanksgiving! Trust your "gut". You know what is best. You'll get all kinds of well meaning (mostly!) advise along the way. Sift through it all and hold on to what you know to be true and do what you do so well..keep Kevin's needs front and center in your decision making. I'll bet once you settle in, you'll make some new friends that will be able to give you time for that haircut! You're one incredible person.

sophie

Vicky K said...

I will let you know as soon as I get moved to Fla, hopefully with in the next few months, won't be far from Tampa so I would be more then happy to come sit in for you while you get a haircut or do anything else you want to do for as long as you need to do it. By the way, no need to say trust you that your doing the best for your son...of course you are, you are an awesome mom and there is no one that can question your judgement because we are not in your situtation. Thank you for sharing everything with us so that we can be praying for you and your family. Oh yeah I checked with my dad who is retired military and as far as his purple heart since you already have the metal you can do whatever you want.

Take Care
Vicky Kerner

The Rock said...

Leslie, You know what is best for Kevin. And I am sure it is hard for you to just move away from everything and everybody ,that you know. Kevin comes first and YOU know that.
bless you
Petra
A.A.

Anonymous said...

I'm glad you had a nice Thanksgiving dinner today. It sounds like Florida is the perfect climate for Kevin's condition right now. I'll be praying that you can find a home relatively quickly so you can get settled in.

I didn't know Breezy is going home soon. It's been wonderful for you and Kevin to have her there. She's a great sister and daughter and I know you'll both miss her a lot!